Monthly Archives: August 2015

A Note for New Rett Parents

These are my thoughts, others may have different opinions. You’ll find that a LOT! We don’t all agree, but that’s ok. So many families, religions, cultures etc. how could we? But for me this is what I would tell you. … Continue reading

Posted in Communication, cure, hope, Music, Rett Syndrome | Tagged , , , , , , | Leave a comment

Army of Us

Duncan Millar and James Westgate inspire so many people everyday. They’ll tell you it’s our girls and boys that are inspiring, but it’s a mutual thing. They ALWAYS find the exactly right words to make us parents and caregivers feel … Continue reading

Posted in Army of us, Rett Syndrome, Uncategorized | Tagged , | 1 Comment

The Next Steps Through the Desert

Wow. While time has been passing, Neuren has quietly, behind the scenes, ¬†been taking step after step and gaining ground with Trofinetide. Check out their latest announcements… http://www.neurenpharma.com/IRM/ShowDownloadDoc.aspx?SiteId=386&AnnounceGuid=23a3caf0-969f-4269-824e-fe32548eefa9 http://www.neurenpharma.com/IRM/ShowDownloadDoc.aspx?SiteId=386&AnnounceGuid=89e7ec87-31e5-4aa3-b029-0b449df3189c So, to me it feels like we went from full stop … Continue reading

Posted in Congress, cure, Neuren Pharmaceuticals, Orpan Drug Status, Rett Research, Rett Syndrome, rettsyndrome.org, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , | Leave a comment